Medicaid chief faces parents of medically fragile children

Alejandro Ako, 15 months, goes into a meeting with the Illinois Department of Healthcare and Family Services with his mother, Guiller Ako, Wednesday in Chicago. Alejandro suffers from spinal muscular atrophy, and recent changes to the state's Medicaid program for children who are medically fragile and technology dependent has parents fearing their children could end up in institutions.Associated Press

Myra Young listens as she holds hands with her daughter Letty in a meeting with the Illinois Department of Healthcare and Family Services on Wednesday in Chicago.Associated Press

Guiller Ako wheels her 15-month-old son, Alejandro, into a meeting with the Illinois Department of Healthcare and Family Services on Wednesday in Chicago.Associated Press

Associated Press

Aftershocks of the $1.6 billion budget cut continued Wednesday as Illinois Medicaid officials faced worried parents of medically fragile children at simultaneous meetings in Springfield and Chicago.

In Chicago, nurses monitored the beeping, droning medical equipment of several children brought to the meeting. Their parents, voices pinched by distress, took the microphone to question program cuts they fear will force them, for financial reasons, to move their children into institutions, where the state would pay for their care.

Gov. Pat Quinn signed the Medicaid cuts into law last month to save a program he described as on the brink of collapse. Among more than 60 other program cuts, a $15 million reduction to a part of the Medicaid program for medically fragile and technology-dependent children means an estimated 50 higher-income families may lose coverage entirely, and new co-pays will be required of about 1,000 others.

Generally, a family of three with an annual income of more than $95,300 will no longer be eligible for the program. On Wednesday, parents complained they haven't been notified individually about the changes and are unsure if their children will be eligible after Aug. 31, when the current program's federal endorsement expires. The state has submitted its new plan for federal approval.

"They desperately need to know how to plan for their children," said disabilities advocate Margaret Storey of Evanston. "They need to know what to do. Do they need to get divorced? Or quit a job (to lower their income)? ... It behooves you, as the people on record for running this, to get it straight. You have got to communicate with these families. It's the least you owe them as human beings."

Some parents filed a lawsuit Monday in federal court in an attempt to stop the changes. With that lawsuit in mind, an attorney sat beside Illinois Department of Healthcare and Families Services Director Julie Hamos at the Chicago meeting.

"She insisted on being here," Hamos said of the attorney. "We do know there is a lawsuit pending. Two days ago, we might have had a more open discussion." Hamos added that she wouldn't be able to answer questions related to issues in the lawsuit. Theresa Eagleson, an administrator in the department, ran the Springfield meeting.

Hamos insisted several times that the state doesn't want to move children into nursing homes or permanent hospital care. She emphasized that the cuts were difficult, unprecedented and affect many thousands of people, including more than 25,000 working parents losing coverage under a program called Family Care, "some in the middle of cancer treatment."

She said her agency had asked lawmakers for a higher income cap for the medically fragile program, but was rebuffed.

"We are a Medicaid agency that does not provide services for all people," Hamos said. "Not anymore. ... I urge you as a group of advocates and families to approach the legislature and see if you can have the income cap lifted or adjusted. ... We tried and we failed."

Myra Young brought her 4-year-old daughter, Letty, who has a rare muscular disorder, to the meeting. The girl held a "Keep Me at Home" sign. "We're such a small, rare population of very expensive children," Myra Young said. Her husband is an architect and she is a horse trainer and riding instructor. Together, they make about $90,000.

She said she expects the changes will mean they will pay about $400 a month toward their daughter's care, which she said they can't afford. They already pay $4,000 a month for private health insurance, which doesn't cover home nursing care.

Young gave Hamos low marks for her interactions with parents at the meeting.

"She does not care," Young said. "She doesn't understand what this means."

Attorney Robert Farley, who is representing some of the parents, said he would go before a federal judge next week to request a class action certification for the lawsuit and a temporary restraining order against the state.

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